Need Some Serious Help (GARYS case)

[GARYS]

Thanks for all of your responses!!
In response to SS, yes alcohol does make me feel great while I'm drunk and I used to drink quite a bit before all of this came on, but now I have it stuck in my head from all the info that I have always read that it makes things worse I dont drink, I also quit caffeine for the same reason. Like I said though, there is no telling what is going to bring mine on bad, I have never noticed anything from eating or drinking anything, by the way I also never eat spicy foods. I also did roofing for a couple years before I got this, I always cut in the valleys so I was always in some weird bent up position. My rectum does always feel tight, I even (sounds weird) but I hold my butt cheeks apart when I'm laying down and it seems to help a little. So does this really sound like irritated nerves and/or spasms? If any of you were in my position, what would you try first af course along w/ the stretching and external TP treatments? I have tried a couple of times to do internal stretching a few times but not real sure what I am feeling for. A PT did tell me my pelvic floor was tight, but she didn't find any trigger points. I did get terrible flares after she treated me and thats one of the reasons I stopped (before I knew it was a good sign). As much burning it caused for the week after If I only knew for sure it was the way I needed to go I could have stuck it out. I was really hoping she would find TPs but when she didn't I kind of lost hope in it. I also didn't mention that since I started stretching I have really increased on the frequency. Thanks

[GS]

schedule an appointment with Tim Sawyer in Los Gatos, California. He will let you know for sure if your problem is trigger point related or not.

[Clay]

Garys, it's impossible to read your posts without feeling your pain.

You mention hypersensitivity, as with a shower. I've had times like that when I've been sick, and noise and light were painful. It isn't an uncommon symptom with chronic illness - at least chronic fatigue.

I suspect some catastrophic thinking from what you've written. I'm, ahem, pretty familiar with that and may be reading my own problems into yours. I can take a vexing problem and turn it into Armageddon in about an hour. My wife can take the same problem and either brainstorm solutions, or at least put it in perspective and let it go. I finally saw a PhD psychologist for cognitive behavioral therapy. It's hard work, but it's working to get me grounded in normalcy again. Another real value is that shrinks tend to really listen to you, where doctors tend to blow you off. Just talking about all my symptoms helps me see them more clearly. I don't see a shrink to figure out whether I hated my mother. I go to a man I greatly admire and he acts as a life coach.

I try to trust my instincts when I don't fully understand a problem. I've had to learn NOT to trust what I feel in my pelvis. The pelvis is the biggest liar in my body. I try to love it and respect it, but I've come to realize that it's wired up so badly that I can't tell what's wrong just by listening to the pain. I have to listen to the pain, but I have to reinterpret what it's trying to tell me. Just because something doesn't feel right or hurts doesn't mean that there is a problem in the area the pain comes from. There's a problem, allright, but it's likely 6 inches away. Frankly, I don't think your odd sensations while urinating mean anything is wrong.

I hate this damn disease. My worst pain is mostly rectal, and I'm about as obsessed with moving my bowels as you are with peeing.

If Xanax doesn't work for you, have you tried Ativan?

[scoobysnacks]

Garys,

You need to get back into some internal work, stretching, external massage, take two baths per day, really work on this. You dont have to have TPs to have severly constricted pelvic muscles. Two PTs, one at the Cleveland Clinic, who has trained under Dr Wise, told me I had not PTs, and only a mildly tight pelvic floor. She did say my anal sphincter was continually contracted, along with the small surrounding area,, that is my problem, but its work itself out day by day.

I really think you need to re-dedicate yourself to this in order for it to go away. Internal work was the biggest thing that improved my condition, but its scary, and you should go to someone first so you know how it will feel. To help with the flares afterwards use a valium or Ativan.

I use alcohol in the bath to help relax further. I take 2 preliefs with each glass to combat acidity.

Anyways, good luck,

SS

[freddyj]

Gary, it seems like you want to know the exact cause of your symptoms and when that doesn't happen after one or another attempt there is a spiraling frustration and anxiety phenomenon. I felt similar panic about a month ago and had incredibly severe symptoms, some of which sound similar to yours. Several times, out of the blue, I got horrendous pain with urination that was greatest when the sphincters closed (at the end) with a sense of residual urine in the urethra, lasting urgency and dread every time I felt the slightest urge to go.

Biggest thing for me was realizing that with a negative cystoscopy you are really only left with neuromuscular causes and perhaps IC. The lessening of anxiety did not happen immediately but after a few more flares (again, for no apparent reason) and several weeks I felt like symptoms were responding to decreased stressing out. I focused on them less and, importantly, acknowledged to myself that I have always had somewhat frequent urination and some type of discomfort even before chronic prostatitis / chronic pelvic pain syndrome started. That thinking helps me feel less dread every time I have the urge to go and less disappointment when I don't have this "perfect urinating experience" I have been expecting to just miraculously happen one day.

Last thing I wanted to mention. I have not tried any PT or massage or whatever so I'll be cautious about commenting on it because it certainly seems to help a lot of people. Perineal pain for me seems to be referred secondary to the urinary dysfunction, LUTS stuff, and thus I do not believe any amount of stretching or prodding of the internal or external muscles will do much good. My point for you is that if your concerning symptom is similar to mine (sphincter or nearby) then PT ought not be the first throw--especially if you don't have trigger points on a second exam done by someone who knows. For me the idea of spending an hour or more a day stretching and whatnot only makes me feel more stress and hopelessness. I'm a fan of the body fixes itself idea. Given a decrease in tension/anxiety/worry and a bit of continued time it will ease the pain all by itself.

ciao

[carld]

Freddyja, there is something to be said about not stressing and time. Just those two factors can help. I do caution when I say this because LUTS, my main complaint and pain I think in men is related to dysfunction from tense muscles that need to be worked on daily for a long period of time. Imagine a long thin balloon( urological organs), fill it with water and your hands are the muscles around those organs. Stress, (your hands) causes tight muscles to press on the "balloon". You get refered or displaced pressure that moves to other parts of the balloon/ organ. That creates the chaotic environment that creates inflammation and pain and discomfort. So release that pressure and you release the dysfunction and all the other suffering the comes with it over time. Just my way of seing how this gets us in the first place.

Garys, stick with it and give your self at the end of the day peace time, take a hot bath, kick back in front of your fire place and sit quietly and do some stretching. Feel the warmth of the fire place and go there. I really believe you will feel better and try to carry that with you daily when you are out in the field getting the shit kicked out of you trying to make a living to take care of your family. That's what this whole thing is about. We are people who care about our families and want to do good my them. We feel inside there for we suffer. Let it go slowly and we all will get better with time and effort. You have all of us here to see it through and be here to help you. Take care, Carl...

[GARYS]

Thanks again you guys! I went back to the main page and started reading again and also started taking my any accredited quercetin product again. I'm not sure how old it is and I had 20 pills left out of a bottle of 60 so I guess when I tried it a while back I may not have given it a chance. It does make sense that I need internal work and I have had about five sessions in the past. My very first one was with Rhonda Katarinos and it was just kind of to show another PT who was going to start treating me that was a little closer to home (still 3 hrs away and $200/ session) how to do it. After the first treatment I felt great even though she found no TPs, just tight pelvic muscles. After two weeks of feeling pretty good it was time to see the other PT and after her treatment I felt horrible and then again the next 2 times I saw her every 2 weeks. I spoke to Rhonda and told her how I was feeling so much worse after these treatments and made an appointment to see her again. Well I did and it had the same effect, another flare up (she didn't tell me and I didn't know at the time that treatments caused flare ups) so I stopped seeing both of them and really can't go back after how it all ended. I would really like to know how I could stretch these muscles myself. I have tried but nothing seemed to happen at all (no worse or better) Anyone have any good ways of just making these muscles longer in terms that even I can understand? I do have the book AHIP and see these diagrams but I'm not exactly sure what I need to do. Do I just hold my finger to each side and apply pressure? I also am going to try and find a therapist who takes patients without insurance to try and tell me how not to let this have me so obsessed and fearful (or is there any good books that I could start with?) Thanks again

[HelpADude]

A great book for me is this one which was mentioned on a TMS (Dr. Sarno's theory) site:

Everyday Zen: Love & Work
http://www.amazon.com/exec/obidos/ASIN/ ... I'm/cp58-20

As with any book of this type, YMMV

[GARYS]

This thought has been going through my mind a lot lately especially since reading SS story with going in for treatment. I have had PT done about 6 times in my life (internal) all that ended up in a flare that caused me to discontinue. As anyone on here probably knows my worst problem is burning/stinging/urgency following urination, my question is could it be that the treatments are just irritating nerves and muscles in there and thats not something that can be treated with PT or would it definitely be because the short muscles are irritating things. I mean could I have permanent nerve damage that can't be treated? I hope this makes sense. I have also been having a lot of burning in the souls of my feet that usually came at the same time as the urethral burning.

[scoobysnacks]

GARYS,

Not sure on the nerve thing. I bet webslave could offer more on that. Personally, I would rather think that its not irreversible nerve damage and do all I can to rid of this.

The feet thing you mention intrigued me, because, if you have read my other posts I have suffered from painful arches in my feet for years as this condition came on. I always said, this feet thing came on later in life, and so did CPPS, or did it?

I have found TPs in my calves, that with treatment, have already allowed my feet condition (previously diagnosed as plantar fascitis (or inflamed tendons of the foot)) to ease. Running the other night on the treadmill I felt no pain there whatsoever, now if the pelvic pain and dysfunction were as quick to abate. Not the case though.

Regards,

SS

[webslave]

Ask yourself why PT makes things worse. You could do that same PT to a normal fellow and he'd have no symptoms. So there must be a connection between the PT, the muscles, the nerves, and your burning (from inflamed urogenital epithelium).

[Richie]

If the PT causes flares, they are hitting the right place. This takes time and consistency. You need follow through. Going once in a while only allows you to see the aggravation end of it. Try every other day for two weeks, then ask the same question.

[GP2]

I do worry that I'm only getting internal TP done every 3 weeks on average!

[GARYS]

I see a doctor tomorrow to get a prescription of Pyridium refilled now that I started needing it again after 2 years, but I am going to ask for an antihistamine. (I think). I have been reading the posts from the antihistamines section, but I am as confused as they were. I have the urethral burning, frequency and sometimes bladder discomfort. Has anyone with similar symptoms been helped by antihistamines. I read about a different Atarax with some of the bad stuff taken out of it. Which would be the best one to ask for? Some people said it made things worse, could it be permanently made worse by taking them?
Thanks

[GARYS]

I went to see a doctor on Tues. to get a perscription for Atarax, I made the appointment a week before and in the time leading to the appointment a really bad flare started. I had been finishing my basement and to get myself to finish we decided to have a new years eve party. I worked until midnight the 2 days before new years stressing out trying to get it done, and that day until six p.m. and the party was to start at seven. Needless to say I was beyond stressed and also had about 6 beers that night. I couldnt sleep and the next day I had to go to the inlaws house for new years day. My wifes brother and cousin were sick with something but I felt alright, but Tues. night I started feeling a little sick and dizzy but I also started taking Effexor the day before so I wasn't sure if I just felt strange because of starting a new med. Today I missed going to work because I felt so bad and while I have been home I have been in one of the worst flares in years. I had my wife pick up my perscription of Atarax but I am worried about starting it because of the sickness and flare up. Could the flare up be from the sickness, the Effexor or all the stress (or maybe all)? Should I start the Atarax since I maybe I'm having a flare up from mast cells. These questions probably dont make a whole lot of sense but I am so scared from this flare that I am shaking ( w/ a horrible feeling that things could be back for good). From this day forward I am going to do absolutely everything I can to get over this!!!!!